Frustrations

I'm frustrated.

I absolutely hate being on the phone doing nonsense things that I've done a million times. I'm looking at you wheelchair company and medical supply company. Those two are the worst!

Fortunately since my last wheelchair appointment she has been behaving like a dream. But I still have a part on order that needs to be replaced and it has been a month.

Then there's trying to get my money back from the muffler accident. That's been a lot of fun. Three e-mails and one phone call today. 

Plus I spent 80 minutes on the phone with my medical supply company only to be told that they never got the new scripts for my medical supplies that I've been trying to get for the last five months. If I relied on them for colostomy supplies I'd be using Ziplock baggies. They are awful.

Who runs these for-profit companies?

How can they get away with treating their clients like this?

How are there not more alternative?

What a massive racket all of this is!

It costs a fortune to be disabled. Both in money and in time.

You look so healthy!!!

Frustrated

I think that's the number one word I would use to sum up my chronic illness. "Feeling frustrated" a good majority of the time. 

A big cause of that feeling comes from the moving target of my kind of illness. I literally never know how I'm going to feel, what I can or can't do, from one second to the next. I can kindove have a plan. I can guess. I can take what I think will be preventative measures, but there's zero knowing where my body will end up.

Case in point last night. I was coming off a hard weekend where my body just needed a lot of TLC and rest. I missed out on a lot of fun things we had planned (= frustrating). Then last night something was wonky with my breathing all... night... long. Was it asthma? Allergies? My lung muscles not working? Too much dust in my room? Heck if I know. I just had a very hard time breathing and slept like crud.

I'm a problem solver by nature, so this morning I look up tips for night breathing and find my pillows are long overdue for a wash. Not the case... the pillow. And my favorite soft one that I keep by my face (along with my stuffed shark) haven't been washed in at least a year. Ok, good place to start.

Me and my buddy Bruce

Then how about using my inhaler more? I thought I already was, but can't hurt. I already have an air filter in my room, but is it positioned right? And how about that throw rug, does it need a wash? And here we have my entire day.

Now my whole Monday has gone from everything I had planned on doing to trying to make my room as "lung friendly" as possible. This is life with a chronic illness. And it is very frustrating!!!